Lady Mar writes to Prof Wessely

Wah, wha, wha, - how is it possible to be picked up the street collapsed in the 21st century and told in Accident and Emergency it's just in my mind. That is unforgiveable. And the Countess of Marr knows the patheitcs of the psycho mob.

"Stockholm syndrome, or capture-bonding, is a psychological phenomenon in which hostages express empathy, sympathy and have positive feelings towards their captors, sometimes to the point of defending them. These feelings are generally considered irrational in light of the danger or risk endured by the victims, who essentially mistake a lack of abuse from their captors for an act of kindness.[1][2] The FBI's Hostage Barricade Database System shows that roughly 27% of victims show evidence of Stockholm syndrome.[3]"

Most of have engaged with psychiatrists and psychiatry. I have. My CFS was first diagnosed by a psychiatrist, in 1989. Its an important step in dealing with an ME or CFS diagnosis. Our issue is not with psychiatry, its with dubious and unfounded psychiatric hypotheses, that lead to dubious and unfounded treatment.

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I've clearly misunderstood some of your previous posts. But OK, (and setting aside the 'we' - which would at least require definition in terms who might want to 'sign up') where does this 'issue' with "dubious and unfounded psychiatric hypotheses", take 'us' ? How is this ‘issue’ to be effectively expressed or exercised in ways that change current health services provided to M.E/CFS patients, for the better ? Given that the process is not be one of a challenge to psychiatry as a whole, what approach is it you are actually advocating ? Would it for example involve positive engagement with services for M.E/CFS patients within which Liaison Psychiatry was integral but where psychiatric and psychology services were provided to patients on a pragmatic case by case basis rather than a default prescription of psychiatric care ?

Hi IVI, I have no problem with patient negotiated treatment that isn't mandated and where full and truthful disclosure of the issues occurs. Even if that is psychiatric. There are however huge issues around doctor training in this area, and much of the training is based in part around privileging psychogenic explanations. Liaison psychiatry, or indeed any medical consulation, is problematic if the treating physicians are not sufficiently aware of the science, and if much of what they think is science is wrong.

There are numerous cases where treatment is mandated though, either directly or by subtle coersion. How prevalent is this? Prevalent enough that I hear about it regularly, though I cannot dispute that this could be from a selection bias as such cases are more likely to come to my attention.

I am not actually advocating an approach in a direct sense, which will become apparent over time. I am advocating a different view of the entire structure - almost a different paradigm. Action can come from that view.

I am also not advocating we select a narrow and specific advocacy approach. I think we need many approaches. In particular I want to separate out approaches that deal with the science, and approaches that deal with the politics. Within the politics, there are several subthemes. First is to cooperate for change, which is what you seem to be advocating IVI. Second, is pursuasion of those who can be reached ... more education than anything else. Third, is opposition to alternate political viewpoints that are not in our interest. That includes proponents of the (bio)psycho(social) model who are often advocating their approach as something similar to a panacea, whether overtly or by more subtle innuendo.

Its the science that will get us our change. Its the politics that determines how fast we get there.

I don't believe we should be using a carrot or a stick approach. We need to be more flexible than that. The goal is not to destroy psychiatry, nor even psychosomatic medicine, and neither is it to destroy their proponents. The goal is to change things so they are no longer broken and ineffective. That means that aspects of these things have to change, and change can involve opposition.

Mind you I would be surprised if in the long term psychosomatic medicine is held in even the low regard it is held now. As a subdiscipline it is dying, and rightly so in my view. It needs to change or perish. The biopsychosocial model was supposed to do that. Given that they just stuck a superficial image of bps on top of existing psychosomatic medicine without actually changing how things work, I doubt they can succeed. Indeed the evidence is that they are failing, though they are making headway in selling their approach to government, rather than establishing the science that would really justify it.

"Stockholm syndrome, or capture-bonding, is a psychological phenomenon in which hostages express empathy, sympathy and have positive feelings towards their captors, sometimes to the point of defending them. These feelings are generally considered irrational in light of the danger or risk endured by the victims, who essentially mistake a lack of abuse from their captors for an act of kindness.[1][2] The FBI's Hostage Barricade Database System shows that roughly 27% of victims show evidence of Stockholm syndrome.[3]"

Please note the only symptom listed is 'fatigue' with emphasis on "Illness beliefs". These services were negotiated and accepted by the local Sussex CFS Society (known locally as the 'Sussex Fatigue and Depression Society') ....... which sidelines and alienates people with CCC ME.

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I cannot extrapolate much on this issue at the mo as I have a broken right arm and am very slowly typing with one finger. But I provided a dossier of evidence re what is wrong with the 'cfs/me' Services in Sussex to the APPG NHS Services Inquiry of 2009.

Referral criteria
Patients accepted as referrals into the Sussex CFS/ME MDT need to fulfil the following criteria;

Aged 16 or above, but no upper age limit

Under 16s should be referred to Acute or Community Paediatrics or CAMHS

A primary complaint of unexplained fatigue which is disabling and affects physical and mental functioning.

No clear alternative medical or psychiatric diagnosis has been made

The duration is at least 4 months

There are copies or reports of normal or negative investigations, as described below (see notes on medical screening), performed in the previous three months

The patient is willing to have a biopsychosocial and management assessment

The GP or referring doctor is responsible for providing reports for benefits/employment/insurance purposes as appropriate, which will not be provided by LMDT staff.

Notes on Medical ScreeningAssessment All patients will be assessed by a doctor experienced or trained in the diagnosis and management of CFS/ME. The assessment process is intended to determine whether the diagnosis of CFS/ME is appropriate and what further management is indicatedN.B. The medical assessment here is designed to be done by the LMDT doctor, but it may be possible in the future to give this responsibility to the GP or other referring doctor, with appropriate protocols and training.

Examination All patients will undergo a physical examination. The extent of this examination is at the discretion of the examining doctor, and will be influenced by the history.All patients will undergo a mental state examination.

Investigations Prior to Referral – all patients will have the following investigations performed: Full blood count, ESR or C-reactive protein, urea and electrolytes, liver function tests, calcium, albumin, creatine kinase, thyroid function (TSH and free T4), coeliac screen, random blood glucose, urinalysis for blood, sugar and protein.(NB these tests are to be completed by the referrer, before a referral is accepted. Depending on the length of history and age of the patient, these tests should normally be done within three months of referral.)The history may suggest the need for other tests (e.g. ANA, Lyme serology) but in the absence of a suggestive history no further tests are mandatory.

————————

Link to Barts

The CNCC for the Sussex Wide CFS/ME Service is Barts, London. The minutes of a West Sussex PCT Meeting 24/5/07 say:

… The Sussex MTD will be linked to Barts’ who will provide consultation and training support in its role as CNCC. The support provided by the CNCC will be mainly in terms of education and advice to the Local Multi Cisciplinary Team, in order to enable patients to receive their care locally. The Barts’ CNCC will also offer one-off consultation on more complex cases where this is appropriate…

These Sussex CFS Services first had a clinical lead (Barts trained Dr Brian Marien) who was a specialist in psychological medcine , Stress, and CBT (with private clinics).

Then the clinical lead of Sussex was a GP who recommended Lightning Process to patients who were refered to the sussex cfs services by their GPs. He concluded (eventually) that Lightning does not help people who are ill. But only after numbers of sussex ME patients had paid out circa £600 each to discover that Lightning is overpriced bog standard coaching, and in health terms, a total con.

PLease note that Phil Parker's Lightning Process Company has since, twice been found guilty by the advertising standards authority (ASA) of making false cure claims.

We are the Sussex Wide CFS/ME Service. Our service is for people with mild to moderate CFS/ME. We provide outpatient treatment at several locations across Sussex. We will help you with learning self-management strategies. The service is aimed at assisting with diagnosis, assessment, therapy and treatment (where possible) for adult patients diagnosed with mild to moderate CFS/ME, using evidence based treatment programmes following NICE guidelines.

"We are the Sussex Wide CFS/ME Service. Our service is for people with mild to moderate CFS/ME. We provide outpatient treatment at several locations across Sussex. We will help you with learning self-management strategies. The service is aimed at assisting with diagnosis, assessment, therapy and treatment (where possible) for adult patients diagnosed with mild to moderate CFS/ME, using evidence based treatment programmes following NICE guidelines" ... [the text should then continue:] ... which do not reduce physical disability, and which help some patients (less than 16%) feel better about their symptoms.

The Sussex NHS service could only offer me CBT/GET treatment, and the diagnosing consultant did not seem to understand the nature of CFS/ME (he seemed to believe that I should experience 'malaise' only after exertion!) , and (IMO) the CBT/GET classes were patronising, and an insult to CFS/ME patients, but the staff who ran the therapy classes were extremely kind, considerate and flexible. They told me that GET doesn't suit everyone, and that I was free to try it, or decline it, or to drop out of the classes at any time, and that I shouldn't feel any pressure to take part. So I was very impressed with attitude of the staff who ran the CBT/GET course for the Sussex NHS.

I've been gone for a few days, am recovering from the holidays so excuse my "froggy" mind I don't get the Stockholm syndrome nor its relevance to this thread. Did I miss something? Wouldn't be the first time, eh?

I've been gone for a few days, am recovering from the holidays so excuse my "froggy" mind I don't get the Stockholm syndrome nor its relevance to this thread. Did I miss something? Wouldn't be the first time, eh?

I am not sure Stockholme Syndrome is relevant, but I have one understanding of why it might be mentioned. If there are other views, please post them.

First, throw out the Freudian babble.

Hostage takers are in a position of extreme authority. They have power over the hostages. The hostages are in a crisis response mode ... highly emotional. This may have considerable impact on brain function. These authority figures threaten severe punishment and sometimes dish it out. The hostages capitulate, become subservient to the hostage takers, and act in all ways as though they were under the authority of the hostage takers.

You can even see this behaviour in chimpanzees, its been well documented. Its classic alpha male stuff, plus a bunch of other stuff I don't want to discuss here.

Those who promote CBT/GET in combination with authority figures from social support to medical, government agencies and politicians, have power over CFS and ME patients. Many of us are highly intimidated. Some have developed PTSD from this ... its extreme and traumatic intimidation in some cases. The analogy is therefore that those who are apologetic to those in power, who advocate cooperation with those who could severely abuse us, have made the same kind of psychological bond as hostages in a crisis situation.

As I said I do not necessarily agree with this. I think other things are going on, including political polarization, and a conservative viewpoint is much more cooperative with authority. It goes with the territory. A progressive viewpoint however is much more about looking at other factors, sometimes a wide diverse group of factors. To claim Stockholme Syndrome would be going way in advance of the facts, while simultaneously dismissing real arguments and views that exist within a potentially conservative viewpoint. It also risks labelling such views as conservative in a denigrative way.

I mentioned reading about Stockholm Syndrome. Angela Kennedy brought it up earlier on another forum and hopefully she wrote about it in her recent book. There may be better terminology but the effects and behaviors do exist in sometimes more subtle forms. I've seen it in some ME/CFS activists since the 1980s. If anyone has a better way of referring to defending oppressors and emulating their behaviors I would like to know it, but it probably deserves a separate thread.

I will oppose 'messing with people's heads' by whatever method or terminology used, and I hope others would actively do that as well. Although, as Alex wrote, some people have PTSD.